The Mater and Tallaght hospitals aim to build a genetic profile of those at risk from sudden cardiac death
A NATIONAL REGISTER of people who have died from inheritable cardiac diseases is being developed by consultants in the Mater and Tallaght hospitals.
It is designed to build up a genetic profile of those at risk from sudden cardiac death and to assist with the screening of those at risk.
Joseph Galvin, a consultant cardiologist in the Mater and James Connolly hospitals, says “because each country has its own unique genetic background, every country will have a slightly different ethnicity”.
He says the register is needed because the prevalence of inheritable cardiac diseases such as cardiomyopathies “cannot be assumed to be identical to that in the US”.
Galvin says the focus of the Mater’s Family Heart Screening Clinic is on families affected by sudden adult cardiac death.
Tallaght, which has a paediatric unit, also sees younger people and children.
The Mater clinic has screened about 250 patients so far this year and Galvin says a general cardiac clinic is not suitable to tease out the complex family histories involved with inheritable cardiac conditions.
The Mater clinic, with its family screening nurse, was needed to find out “who, for example, needs to have a transplantable defibrillator put in. And knowing which genes to look for can only be helped by having national registry information.”
Galvin favours targeted screening over a national programme aimed at all children playing sports. He also believes the widespread dispersion of defibrillators is vital.
“In Croke Park we have had 11 ‘saves’ with the defibrillator programme there, all of whom were in the stands.”
While public awareness of sudden cardiac death, and demands for screening, have risen significantly since the death of high-profile athlete and Tyrone footballer Cormac McAnallen, the funding for such services has not followed, and both the Mater clinic and the Centre for Cardiovascular Risk in Younger Persons (CCRYP) based in Tallaght are funded almost entirely by charitable contributions.
The Mater centre costs about €250,000 a year to run while the CCRYP requires approximately double that.
The CCRYP at Tallaght Hospital has screened more than 1,000 people in its first 10 months in operation. It was officially opened last November to try to reduce the approximately 5,000 cardiac deaths in Ireland annually. An estimated 80 deaths, or 15 per cent, are of people under 35.
The clinic provides free screening for young people who may be at risk of sudden cardiac death and has a full-time cardiologist, cardiac nurse and two cardiac technicians, and also operates a clinic in St James’s Hospital in Dublin.
The screening aims to diagnose patients with inherited or congenital cardiovascular diseases such as cardiomyopathies, rhythm disorders and Marfan’s syndrome. It was set up through the combined efforts of project director, consultant cardiologist Dr David Mulcahy, and the charity, Cardiac Risk in the Young (CRY), which was established in 2002 by parents who had experienced the sudden death of a child or young person.
Charity co-founder Michael Greene, whose 15-year-old son Peter died in 1996, says CCRYP is “on course” to meet its target of screening about 1,600 people referred to it by consultants and GPs and has also seen a number of people from the North.
“The centre offers a comprehensive service in one place. You can get your test results on the same day, get referrals or speak to counselling and support staff, all on one site,” says Greene.
The majority of the Tallaght centre’s €600,000 running costs are met by “private donations” and Greene admits it is an ongoing challenge to raise this. Among the myriad funding projects supporting the centre is the annual McQuillan Cup, a 5-a-side football competition held in University College Dublin each September by friends and relatives of Peadar McQuillan, a 34-year-old architect who died during a match two years ago.
McQuillan’s brother, Ed, says the competition was started “to raise awareness, and funds and also to act as a memorial for Peadar”, his football-mad brother.
After Peadar’s death his family were collectively and individually screened at Tallaght and a member of the family was identified as having an arrhythmia, which is currently being monitored.
Last year the McQuillan Cup raised €24,000, which was split between the Mater and the Children’s Hospital in Tallaght. “This year, due to the recession and its impact in particular on the building profession, the target is half that with the CCRYP at Tallaght the recipient,” McQuillan says.
For further information:
- www.cry.ie/
- www.mcquillancup.com/
- www.materfoundation.ie/family-heart-screening-clinic
